Case Stories

AAC case stories from different personal and professional perspectives.

Adam’s experiences with different AAC systems

I am a speech and language therapist and want to share the story of a young man with you. ‘Adam’ is now nearly 19 and I have known him since he was seven. He has always been a friendly young man who likes to help. He gets his message across to you by taking you by the hand to something he wants, or by pulling at your jersey and pointing to things. He uses his voice well and by that you can tell when he is happy, concerned, uncertain, angry and a range of other emotions.

Over the years we have tried lots of different AAC systems with Adam and to begin with they all seem to be good and people are interested in them. He has used picture symbols on cardboard or in books; he has used light tech devices with recorded words and sounds associated with activities. One thing that does happen quite a bit is that if Adam gets upset he tends to throw things. This is one of the reasons why we moved away from using light tech AAC – not because of fear of it getting broken or potentially hurting someone but that when this happens it makes Adam inconsolably upset for a considerable period of time after the incident.

Recently, we have found that what works best for him is to use digital photographs which he helps to take, print off and then put in his communication book. He takes great delight in sharing his book with people and recently has used it spontaneously to ask to do something, or see someone. This is a huge leap forward for Adam. What is slightly sad though, is that I think we (Adam’s family, Adam, me and his class teacher) are coming under pressure to go for a technological solution again. Perhaps that may be helpful in the future but for now I do wish ‘low tech’ was seen to be as valuable as high tech!

Things you may want to look into: picture symbols, communication book ... see aided communication

December 2012

Bill's experiences after a stroke

Bill and Marge had been a hectic pair, keeping everyone on their toes especially their grandkids. Bill woke up one morning and found that he couldn’t get out of bed and that Marge seemed to be speaking a different language (or at least that was how he remembers it). Bill had had a stroke. At 83 he had always kept himself fit and active, so this came as a bit of a shock.

Bill spent 3 months in hospital and during that time he re-learned how to walk. He found that he understood what people were saying, but they didn’t seem to understand him. He got quite annoyed about that and Marge remembers that this tended to make his speech even more difficult, with the words being more jumbled.

Bill saw a speech and language therapist for a while in hospital and then at home. She kept trying to get him to draw things he couldn’t say. He felt daft and didn’t see how that would help or work. Then she tried a filofax with words and photos in it. That was much better, Bill found that if he could see the word it helped him to say the word. The photos were more difficult – they didn’t help him say the word but it helped him get his point across to someone. The filofax was great, because he and Marge could add in things that were useful to them and the family. Then the grandkids got involved too, but soon they were putting all of these things on an iPod for Gramps. They loved it, he didn’t. Bill started getting out and about a bit more and was never without his filofax. In fact Marge was fairly sure he was starting to sleep with it under his pillow.

Craig's experiences of getting into work

Hi, my name is Craig and I have been asked to share my experiences of getting into work. I guess some background would help you! I am 35 and have cerebral palsy. I use a powered wheelchair to get about. I live on my own but have three different personal assistants who come and support me. Oh yes, and speaking is not great for me, so I use a communication aid. It’s a good one; I have used the same type for years. I am told I am pretty quick at speaking even although I don’t use my own voice.

When I left school I went to a specialist college. I think that is where I got really quick with my communication aid. Not long after that I was asked by an AAC company if I’d like to do some work for them. I did but that was really when the trouble started – not with the company, that was great, but with my benefits! Very quickly it became clear that I could only work a limited number of hours per week or lose some or all of my benefits. I need benefits to help pay for things like transport and my personal assistants.

I was caught – I wasn’t getting enough work or enough pay to let my benefits go. It made me feel pretty rubbish. In the end I stopped working for the company but because I enjoyed it so much I asked if I could still do some voluntary sessions. Since then I have picked up bits and pieces of paid work, usually through people want me to talk about AAC or disability. I have to be really careful how they pay me and how much paid work I do over a 6 month period. I would like to do more paid work but I think I would struggle to work full time. I get fed up by the trap I seem to be in but I keep myself busy with a number of voluntary things.

Things you may want to look into: benefits including disability living allowance - from 8 April 2013, a new benefit called Personal Independence Payment will replace DLA for disabled people aged 16 to 64

December 2012

Emily's story about making new friends

Emily, is 7 years old. She goes to a special school miles from home. She loves school and has lots of friends there. She is one of two children who use a communication aid in school. Her LSA and teacher are really pleased with her use of the machine, saying ‘we don’t notice she is using her aid because it is just her voice’. She has it with her all the time.

School put us in touch with a group called 1Voice for a fun family day. Emily and her older brother had a ball there but when we got home Emily said ‘it’s not fair that I don’t have friends who talk like me’.

As a parent it had never occurred to me that Emily would want friends who used communication aids. I am really pleased we found 1Voice because it has given Emily lots to be positive about but, unexpectedly, we have got a lot out of this too by meeting other families like ours.

Funding a communication aid for my son

My son has had the use of a shared communication aid whilst he has been attending school. Neither the school nor the speech therapy department have the funds to pay for individual machines. He copes pretty well with only having a voice part of the time! I think it is just me who gets upset. The school is great and so is his speech therapist but I don’t understand why this is allowed to happen. I have taken it up with my MP, who has agreed to look into it for me but I would love to hear how other people manage to get machines.

Heidi's experiences with facilitated communication

Heidi is an independent lady, living with her team of support staff in a pretty bungalow in the country. She needs assistance in all aspects of her life, but is very independent minded and makes all the choices and decisions about her support for herself.Communication of any kind was not considered by her parents, until they met a practitioner of facilitated communication. This teacher was able to teach Heidi’s parents how to support her head, so that she could point at pictures on a communication board using her eyes and begin making choices about what food she wanted, clothes to wear, music to listen to and places to visit. It proved to her parents beyond any doubt that their daughter was very bright.

Heidi’s parents taught her to read and spell and she was a quick learner. She used a spelling frame to point to letters with her eyes. By the time she was 10 yrs old she was able to attend mainstream school, supported by a team of assistants who knew how to support her communication. Heidi was unable to gain any formal qualifications as the exam authorities would not accept this method of communication, as they considered that the supporters could be cheating and answering the questions themselves.

Supported by her parents and with a 24 hr care package, Heidi moved into her own home at the age of 21 and now has a boyfriend (he is an opera singer) and two cats! She hopes to be able to have a baby with her boyfriend and get married one day. Also, she is trying to find information about electronic speech aids, which can be operated by eye gaze and have speech output. This is her dream for the future.

Things you may want to look into: facilitated communication (FC)

December 2012

Jeff's experiences after leaving school

Born in 1980, Jeff used a communication aid for most of his school life. He was very proficient, and used it in all the lessons. Jeff also used his aid in social settings, clubs and day centres, and was even one of the stars in a film made by a large disability charity, to raise awareness of the life changing benefits of AAC.

After leaving school, Jeff continued to use his aid, but without the support of some of the school staff, he used it less and less. Jeff’s parents didn’t understand how to maintain the device and it fell into disrepair. There was no link with adult speech therapy services, as no AAC adult services existed in the area where Jeff lived.

His parents did not know how to find any information to help their son.

Three years after leaving school, Jeff was without any means of meaningful communication. He became very frustrated, and severely depressed.

Jeff currently attends an adult day centre, five days a week, where he cannot join in any activities. Most of the day he sleeps in his wheelchair, and is taking high doses of antidepressant drugs. He has stopped interacting with former friends, and has little hope for his future.

Jim with locked-in syndrome, using eye gaze

My husband had a stroke 2 years ago. It left him with something called Locked-In Syndrome. Before the stroke he was outgoing and busy now he seems pretty miserable. He uses his eyes to tell me lots of things.Recently, someone mentioned the guy who was in the TV programme who used his eyes to speak with a talking machine. I thought this might be good for Jim but I didn’t know how to go about getting the machine. Just by chance I mentioned it to our Health Visitor and she said she’d look into it for us.

Anyway, it took a while but eventually we were put in touch with a specialist centre who could look at what would be best for Jim. They put him through his paces and suggested a communication aid with something called eye gaze. They also supported us getting the machine through our health service.

We were lucky to get the help Jim needed. He has perked up since being able to interrupt me again. More people need to know about these machines and these centres, we can’t be the only people that need them.

Light Tech AAC for a whole class – a home–school book

Sue is a teacher working with a group of eight pupils, aged from 5 to 7, in a school for children with physical disabilities. Seven of the children are currently non-verbal, with no spoken language used at all, and they all have very limited communication skills, mainly using single signs and symbols.

Sue wanted to enable the children to give their own news in a Monday morning group session and to join in with stories that were read to them. She gave each child their own single message voice output communication aid (VOCA) that could have a thirty second message recorded into it very quickly and easily. The families were shown how to record a short message about what they had done in the evening or at the weekend. The VOCAs were ordered through a supermarket tokens scheme! Each day teaching assistants recorded a brief piece of news from the day at school, so that the pupils could tell people what they had been up to, and families were encouraged to do the same so that the children could share their news at school. This was very successful, families really enjoyed encouraging their children to give the news themselves and most of them returned the VOCAs with a message recorded at least once a week.

At story time Sue and her team chose books which had one or two repeated lines (see below for some suggestions) and recorded these onto similar single message devices. As she read the story the children were encouraged to join with the repeated sections at the right time, making story time much more interactive and engaging.

What next?

Sue is planning to use the VOCAs in an assembly the class will be performing to the rest of the school. The children will also be using them to take messages to the school office e.g. to ask for the register or for dinner tokens and to greet visitors to their classroom

She hopes to get some similar VOCAs that have two buttons so they can be used to indicate a choice or to join in with two repeated lines at story time.

Mark's experiences in day centres

Mark was born in 1980. He was starved of oxygen during his birth, which resulted in very severe Cerebral Palsy. His parents had no more children, and devoted their lives to his care. Mark’s mother gave up her career to look after him.Mark attended a special school, and after leaving school he was taken to a social services day centre five days a week. His intelligence was obvious to people who knew him very well, and his parents often told tales of how he reacted to certain events, like watching TV comedy shows, Mark always showed that he was amused by the jokes.

Communication was a huge issue for Mark. Unable to speak, or make any but the slightest sounds, his only controllable muscles were in his eyelids and eyes. His eyes were very expressive, and if people had the time to sit and speak to him, he could show that he was listening and understanding what was said to him. His parents said that they could understand everything that Mark wanted.

At the day centre (very short staffed!), Mark was often just left sitting in his wheelchair, sometimes for hours, without anyone talking to him. More than once, he was left sitting in the direct sunlight, wearing shorts, and had very severe burns as a result. Once, while being pushed around by staff, his left foot got caught, and was broken in several places. Mark had been unable to show that he was in pain or danger. To control Mark’s severe spasms he was given muscle relaxing medicine, and sedatives, in increasingly high doses. Much of the day he spent asleep.

Friends had seen electronic speech aids, and told his parents that they thought he might be able to use one with his eyes. His parents had been told by professionals in the past that nothing could be done to help their son, which they just accepted, and refused to believe that he would ever be able to use a communication aid. This family lived in an area which had a very limited service in adult speech therapy, and did not fund adult communication aids at all!

Occasionally, Mark attended respite care for a few weeks, while his parents had a holiday alone. He hated this time, as the staff were constantly changing, and nobody in the care home understood his communication. He felt very lost and alone there, and longed for his dad to return to take him home.

Sadly, on one occasion, his dad and mum were killed in an accident, while abroad, and never returned to collect their son. Mark was permanently placed in a care home for elderly adults, where he knew nobody.

With AAC Mark could have made friends and had some choices in his life.

Michael's Eye Gaze Story

Michael is in his forties. He left his special school at the age of 19 and has lived at home with his mum and spent time at day centres since then. Michael has cerebral palsy and lots of physical difficulties. After he left school, staff thought he had severe learning disabilities. As he had no way of communicating easily with people they often assumed he did not understand what was being said to him. Over the years Michael had become very withdrawn and had given up trying to let staff at the day centre know what he wanted as they were unable to interpret his attempts to communicate. At home Michael had lots of tantrums and could be quite aggressive, lashing out at his mum.

Michael and his mum were involved with the nurses from the local community team for adults with learning disabilities. They visited him at home and in his day centre to offer support to try to help the family manage Michael's needs and 'difficult' behaviours. The nurses work closely with other team members and referred Michael to an occupational therapist because they thought he needed a different seating system. The OT worked with him over a number of visits and got consent to ask the speech and language therapist to see him. The therapist from the team felt that Michael understood a great deal more than he was given credit for and that he wanted to communicate more than he was able. She arranged for him to have an assessment using an eye-gaze computer control system with another therapist who specialised in AAC and a rep from an eye-gaze supplier. At his first attempt Michael was able to use the system to play simple games and demonstrate that he understood what he needed to do to control it. He enjoyed the simple games and was keen to continue using the system for over an hour despite becoming very tired. Michael managed to follow instructions to set up the device to track his eye gaze as accurately as possible and was very motivated by the opportunity to choose activities he wanted to try independently.

Michael's speech and language therapist wrote a detailed report explaining how well Michael had done at the assessment session and with the support of his GP it was agreed that NHS funding would be sought. Local NHS commissioners who were responsible for funding most healthcare in the area agreed to fund an eye gaze system for Michael and also to pay for a package of support from a local AAC specialist speech and language therapist and a rehabilitation engineer to work with Michael, his family and carers to set up the system, support the initial learning and on-going review of his progress. As soon as the right mounting kit is delivered to enable the device to be fitted to his wheelchair Michael can begin therapy sessions to develop his ability to use the system for communication. It is hoped that the speech and language therapists from the ALD team will be trained to offer direct support within a few months and that the specialist will simply provide them with telephone support and a yearly review of Michael's progress.

Supplier case stories

Many communication aid suppliers have case stories about successful AAC users on their websites. These can offer useful information and ideas, however it should also be noted that a full and detailed assessment should be carried out by an independent specialist to determine the most appropriate system for any individual.

Terry using a communication aid after a stroke

Terry, aged 35 years had a stroke two years ago. Following the stroke she was not able to walk, her right side paralysed; and she could not say any words at all. To begin with she found listening really difficult, she seemed surrounded by noise and this was very tiring. Eventually, whilst still in hospital, she began to make sense of who people were and what they were saying but her speech was not coming back. This was a really tough time for her and her family. Her two girls (aged 7 and 4) were very scared and upset about their mum and just wanted her home. Terry’s husband had had to take extended leave from work to look after the girls.

After four months Terry was home. She was able to move around the house with a walking aid but still her words had not come back. By this time she was using a communication aid which she could spell words into and it would speak out her words. She had stored some quick fire sentences, ‘girls stop doing that’ being one frequently used!

Over the next six months or so she became quite depressed and lonely, because getting out of the house was so difficult and communication with people was so slow. Her speech and language therapist got her involved with an organisation called Speakeasy and someone from the group came to visit at home and then started going with Terry on days out. This was when Terry realised that the communication aid was just brilliant. Her own speech had not really returned but her spelling was getting quicker again. Her biggest triumph that first year was going to her oldest girl’s school play and using her aid to chat with some of the other Mum’s. Terry still finds it difficult and can feel down about her speech but she is also getting out and about more and starting to do some of the things she used to before she had a stoke.

Tids and the care system

Tids was a healthy baby, born in 1965. At age two she contracted meningitis, which caused severe lasting disabilities.

One, of a large family, Tids was included in all family activities, and much loved by her brothers and sisters, and parents. She attended a special school, which, in the 60’s was only required to provide care, and entertainment.

Tids grew up to be a very beautiful young woman. She laughed and smiled at her friends and family, and loved music. Tids understood everything that was said to her, and showed this by facial expressions, and some body movement. She could show very clearly when she disliked people!

Care staff at the day centre that Tids attended, thought that she may be able to use a computer somehow, with her eyes. They told the management staff of the day centre this, and were told not to waste time and money. There was no spare staff time to work one to one with Tids to enable her to learn to use a computer.

Tids needed help with all care needs, and had to be helped with drinking and swallowing, with great care. Often due to lack of time, she swallowed badly and choked on food and drink, which really scared her, and gave her cramps which were very painful. She was not able to cough and clear her lungs. Sometimes she was put on the floor to help with the cramp.

A close friend had a communication aid, and she loved to hear him speak. It made her laugh and her eyes sparkled when she was with him. He thought that she could have learned to use an aid similar to his, but nobody else agreed.

Tids had frequent chest infections, and failed to recover from one very severe infection. Her funeral was attended by hundreds of people, and she was laid to rest at the age of 32 years, in a cemetery close to the day centre.

Things you may want to look into: communication aids that speak

December 2012

Tom's AAC Journey

Tom has severe athetoid cerebral palsy. From the age of two he attended a special school for children with cerebral palsy. Initially he communicated using his eyes to show what he wanted. At 3 years old he got his first chance to use a voice output communication aid (VOCA) operated using a single switch which he pressed with his head. By the time he was 5 he had a more powerful system using a program with 144 pictures. He had to combine these pictures together to say words and phrases. He was also using some naturally spoken language that could be understood by people who knew him well. He had begun to learn to read using symbols. He was not very keen to use his VOCA and found remembering the key picture sequences difficult. He continued to use his head switch to type on the computer and became a very good at reading and spelling. Between the ages of 8 and 12 he became less and less willing to use his VOCA to communicate verbally. He said the 144 pictures meant that scanning took too long and he couldn't remember where to find the words he wanted to use.

At around the age of 13 Tom was offered a chance to try a different VOCA which had 45 locations and used written words instead of pictures. He found this much easier, as well as using it for spoken communication it was linked to his computer so that he could use it to produce written work more quickly. He continued to attend special school until the age of 19 with further changes of VOCA enabling him to use eye gaze, as well as the head switch, to operate the system. He got GCSEs in ICT and maths and went on to attend a local college. The summer after he left school he bought a PCEye which gave him a much quicker and easier way to operate his computer and he is using this to take part in a mainstream college course and is hoping to eventually do a degree.

Tom's VOCA story began when technology choices were quite limited and he has made excellent use of the many improvements and increasing options throughout his school life. He now combines his communication system with his environmental controls so that by using a single switch and eye-gaze, and employing personal assistants he is able to live independently.